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-   -   First Pregnancy-High Risk-Lupus (https://www.justmommies.com/forums/f106-high-risk-pregnancy/2665157-first-pregnancy-high-risk-lupus.html)

SAL5886 July 11th, 2013 08:48 PM

First Pregnancy-High Risk-Lupus
I'm brand new to the forum. I feel so alone in all this. I thought I could find some emotional support (even if only from one person) on a forum from women who are experienced in this.

I was married in February, became pregnant in March, found out I was high-risk after an ER visit for a high fever, husband had an affair and left shortly after. Having liver complications so far, and elevated protein levels in my kidneys. My spleen and liver are enlarged. Was diagnosed (finally!) with SLE (Lupus). Became homeless because I'm on bed rest and cant work, but found a friend's spare room to sleep in (thank God!).

As for the baby, so far he has echogenic bowel and heart calcifications, and his amniotic fluid tested positive for CMV. I'm now almost 19 weeks. Doc says if he survives, he'll undoubtedly be special-needs.

Has anyone been through all this? Any encouraging words?

rebeccabaltimore and more July 25th, 2013 07:34 AM

Re: First Pregnancy-High Risk-Lupus
It's going to be okay.

My sister has lupus. She's 27 weeks. And she's doing okay. So is my nephew. As far as your complications, let me address them one by one.

Echogenic bowel - This simply means that there was a bright spot on the ultrasound. Sometimes this means there is a problems. Sometimes this means there isn't. Ultrasounds aren't a perfect science.

Heart calcifications - There is a wide range of severity of this. They can be relatively minor.

CMV - This is not fantastic news for your baby. However, do not give up hope. Here is what the CDC has to say about congenital CMV:


Most babies born with CMV (in other words, "congenital" CMV) never develop symptoms or disabilities. When babies do have symptoms, some can go away but others can be permanent.
Having a special needs baby: No one wants a child who has special needs. But I have enough friends with special needs children to know that they love their children and love being a parent to a special needs child. Yea, there are more doctors appointments. Yes, their children aren't the same as other children. You'll love your child just the same, and raising him/her will still be a joy.

Your husband- He is an *******. But it is better to find out now, before youre your baby is here. I know of a celebrity whose husband left her after their son was diagnosed with an autism-like disorder. Her son was 2. Two year olds will notice when a parent leaves.

I had two high risk pregnancies. I lost a baby to a freak situation. My next baby was desperately ill at birth and spent two weeks in the NICU. Things did not look good. Well that NICU baby, who the doctors didn't think was going to live is now 3 years old, sitting right next to me eating an apple and watching Sesame Street. He is perfectly healthy. You should prepare yourself to have a special needs baby. But you should also prepare yourself to learn that doctors are sometimes wrong.

mkljmom September 11th, 2013 05:30 AM

Re: First Pregnancy-High Risk-Lupus
Hang in there. What a stressful pregnancy! Stay as positive as you can. Many of the children I used to work with were CMV +. Their function and cognitive ages all varied depending on the child, but all were delayed. This does not mean your baby will be, but I do think educating yourself as much as you can (if you can without stressing too much) is a good idea.

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